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Pride and Chronic Pain

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July is Disability Pride Month in honor of the passage of the Americans with Disabilities Act on July 26th 1990. Any and all events held in honor of it vary by city and country, but it’s also a time for people to share their experiences of disability on social media. There is also a flag associated with disability pride.

By Ann Magill – Disability Pride Flag [ID – Dark gray rectangle with diagonal stripes in a soft green, light blue, white, yellow, and red.]

Much like it is for LGBTQ pride, there are a lot of different experiences under the disability banner. Whether your disability is physical or mental, visible or not, curable or not, and so forth; people have different reasons to feel or not feel pride in their disability.

For people who are born with disabilities, it can be an intrinsic part of who they are from the moment they begin to perceive the world. There isn’t a desire to cure themselves to be like other people. They love themselves and their disability because it is no less a part of them than their hands and feet.

For others, disability was thrust on them through incidents such as an accident or sudden illness. Some want to pursue a cure to end their suffering and to return to how things were before, and some will. Others have to accept their life has been changed forever and cannot feel anything good in regards to their disability. They can still find pride in how they persevered and changed for the better despite their disability.

It’s important to never forget that two people can have the same exact disabilities, but have experiences and feelings toward their conditions that wildly differ. So it’s important to also know you can’t just assume what kind of pride they feel in their disabled life. There are also more complicated feelings than just what’s listed here.

I have shared both these experiences of being born with and coming into disability. I was born with Autism and ADHD. I was diagnosed with asthma at age 1 and migraines as a teen. I experienced disability all my life, even though I didn’t know I was neurodivergent until about age 30, which is also when I started to be diagnosed with different types of new disabilities.

I would take a cure for asthma and migraines in an instant. However, my autism and ADHD are a different story. I could do without the executive dysfunction, but at the same time, it is core to who I am. I wouldn’t be the same person without it. There are things in my life that I am proud of and part of those achievements had a lot to do with who I am because of Autism and ADHD. It did cause difficulties too, but everyone has difficulties. I just needed to know what I was dealing  with to better be able to overcome some problems and cope with others.

Now, later in life I have become physically disabled to the point I cannot work. I am in pain every day of my life from fibromyalgia and a herniated disk. I also have difficulty walking and experience increased pain due to foot and knee problems too. Like my asthma and migraines, I would love to do away with these things. But I can’t, so all I can do is just persevere and adapt. Which, in turn, has fundamentally changed me as a person.

You can’t have chronic pain and not change on some level. Things you used to do easily become impossible. Dreams you had become out of reach. Everything has to suddenly revolve around your ever present pain. It slows you down, makes it hard to keep up with others. It makes you bitter for all the times you were having a good time but then pain got in the way. Sleeping is never the same and if you’re able to hold on to a job, it’s exhausting beyond belief. The only pride I can take in Chronic Pain is that I won’t let it stop me from seeing my niece and nephew grow up. There are other things I live for too, and take pride in all the things I am still able to hold on to.

These conflicting feelings don’t invalidate each other; nor do the different experiences. As a non-disabled person, you don’t have to completely understand our feelings and experiences, just at least respect what we say. As I said previously, people with the exact same disability have different and even contradictory feelings about their condition. We are not a monolith.

Furthermore, I don’t want people to look at me like I’m some sort of inspiration. I just want people to understand that telling me you would kill yourself if you were in my situation is not the compliment you think it is.

Why Does No One Seem to Care About the Deaths of Those With Chronic Pain?

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This past December, a woman named Jessica Fujimaki died of complications from opioid withdrawal. Her doctor was suspended by the DEA for helping pain patients and she was unable to find another doctor to prescribe her opioids before the lack of adequate and necessary medication killed her. This is a fundamental example of why pain kills.

Photo by Bret Kavanaugh on Unsplash – [ID: Part of hospital bed with pillow and a blue blanket, pills and plastic containers in background.]

She is not the first. She will not be the last. Whether it’s suicide from lack of sufficient pain relief; overdose from using illicit opioids unknowingly laced with fentanyl; or death from complications due to withdrawal like Jessica Fujimaki — pain patients are dying. People continue to discuss overdose deaths from addiction, as they should, but the plight of the chronic pain community is overlooked so that only addiction related deaths are covered in the news.

How can so many people be dying and it doesn’t make the news? For starters, because of the nature of our condition we often have no energy to properly advocate for ourselves. I have tried to advocate for myself, but even what little I can do is so damn hard. The fact I can’t even post more here is just one example of this struggle.

A lot of addiction-related overdoses that make the news focus on affluent white people who had everything going for them until they had surgery and got addicted. While I’m not saying that can’t ever happen, the real story of addiction is a lot different, but rarely do they make headlines. No one wants to talk about the societal issues behind addiction and fact-based responses. It’s easier to just blame the pills and the doctor that prescribed them.

The unsaid reality is that the stories of a young girl dying of an overdose evokes a tragedy in the public that a chronic pain patient does not. In fact, I would argue that people can’t imagine living with chronic pain and think that maybe dying is for the best. I mean, Canada has come under scrutiny lately for approving euthanasia for their poor disabled citizens as opposed to the benefits that would make their lives far more livable.

Due to opioid-phobia, there are far fewer people willing to advocate for the chronic pain community. People have no idea what our suffering is like, so it’s easy to lecture us about alternative medicine or therapies that don’t work. Yes, our condition is tragic to many, as mentioned above, but still not worth getting decent pain relief. Better dead than an addict, right?

I’m so tired of this. I’m so tired of begging people to care and they just don’t. Meanwhile, the opioid crisis is still framed as a prescription crisis when it is entirely about illicit fentanyl now.

We are being punished for being in pain, and our deaths are entirely forgotten. Because why would anybody care about a poor nobody home-bound and living off disability with no hope of working again?

Better off dead? No. A life worth living. I know because I am still living it.

Ridiculous Pharmacy Policy Around Opioids Caused Me to Go Through Needless Painful Withdrawal

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It is completely normal to become physically dependent on medication and go through withdrawal from its absence. Withdrawal from opioids is most stigmatized, but many drugs cause this unpleasant effect. Anti-depressants come to mind, as well as the everyday cup of coffee.

Withdrawal is, of course, unpleasant and to be avoided when on a drug that causes it. For people on regular prescriptions causing withdrawal, they can fill a prescription early to ensure they do not run out. Not people on opioid prescriptions. You have to be constantly aware of your supply and when you can get a refill. However, nothing ever goes perfectly and something always happens eventually. For me, it was a pharmacy policy I was unaware of because I had recently switched from CVS to Walgreens after having enough of CVS. Walgreens is only marginally better.

A few weeks ago, I went through withdrawal for completely unnecessary reasons. Avoidable reasons. Walgreens deleted the last refill from a previous script when my doctor sent new ones in. I told him I had a refill left and to date it for May not April. I didn’t know that was apparently a big mistake.

Opioids have a different set of rules than other drugs. Limits on refills, and when you can refill them. It is a ridiculous rigamarole that does not save lives. I’ve lost people to the current crisis of illicit fentanyl in heroin. I know what it’s like. None of my family members died getting a hold of legally prescribed tramadol.

These are misguided, outdated, and ass-backward rules that punish those in pain and pretend to help those suffering with addiction. Security theater, that’s all it is.

So when I found out my prescription was deleted and I had no tramadol for April, it was after 4pm on Thursday. My pain clinic is only open Monday to Thursday. I couldn’t contact my doctor until Monday. I had extra pills because I saved some for flares or emergencies, and I assumed I would get my RX fixed on Monday. I didn’t realize my doctor would be out and I had to wait another day.

Inevitably, I ran out.

Withdrawal for me starts like restless leg syndrome, only all over the body. You can’t stop needing to move. It meant that night I only got snippets of sleep, the longest being an hour. It’s exhausting, painful, and disorienting.

The worst of my symptoms were Monday night to Tuesday. Thankfully, my doctor filled the prescription immediately and my mom got it right away. Still, almost 12 hours of withdrawal symptoms took its toll.

I felt like I had exercised too much from the constant tossing and turning. I couldn’t think straight for the whole day afterward. My brain was muddled. The absence of one simple pill caused so much havoc. And, of course, it also meant my regular pain levels were higher, it just wasn’t always so noticeable from the overwhelming withdrawal symptoms.

I’m a pain patient and because of how tramadol is classified, I’m not allowed to get my RX early. But if I had been able to, I could have caught the problem before my pain clinic closed for the weekend. I wasn’t allowed that chance. Instead, we are expected to run up to the end of a prescription before getting another. A problem just has to happen on the weekend to be devastating.

I live with the constant threat that my medication could be taken away and I have to go through withdrawal again. Worse would be the pain I could no longer quell and would restrict my life even more. Doctors will slowly taper you on any other prescription that causes withdrawal, but opioids are the exception because of addiction stigma.

I’m not the first or last patient to be forcibly withdrawn from my medication because of the stigma surrounding it. In all likelihood, something like this will happen again. I’m just fortunate to have my medication back. Too many pain patients are not, and it needs to stop. We must return to a humane way of treating pain.

Furthermore, we expect addicts to go through withdrawal almost as penance for their addiction. Drugs exist to make the symptoms easier, but they are not so easily accessible to those who need them. If the object is to save lives, then easing withdrawal symptoms should be a goal for addiction treatment.

No one should be forced to go through withdrawal or suffer needless pain. 

This shouldn’t be a radical concept.

Is the Pandemic Really Over? Not for Many Disabled People.

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Recently, President Joe Biden announced that COVID-19 is no longer a pandemic in a TV interview. It has sparked some commentary and repetitive news clips of his claim. I’m not a scientist, so I cannot say if the US is technically in a pandemic or not right now and I don’t plan to try.

Here is what I do know.

Photo by Daniel Schludi on Unsplash – [ID: Vials of Covid-19 vaccines.]

The pandemic is not over around the globe, and this means new variants will continue to remain a threat. We need to continue to vaccinate here at home and support programs that provide vaccines abroad. Just because the United States might be doing better, doesn’t mean we can just forget about our neighbors around the world.

The fall is always worse than the summer. Just like regular colds and the flu, COVID will surge again as the northern US stays inside from the cold. We can’t be complacent as school returns and our time indoors increases.

Lastly, disabled people continue to be forgotten in the larger COVID conversation. A few months ago, the CDC Director, Rochelle Walensky, blundered by saying that it’s encouraging that deaths from COVID now are mostly among people with multiple comorbidities, as if we don’t matter. Furthermore, the realities of the immunocompromised population are completely ignored. For many disabled people, COVID remains a very real and deadly threat.

There are two simple things you can do right now to make things safer for our disabled community:

1. Get vaccinated and boosted. This will reduce the ability of community spread and the emergence of variants.

2. Mask up inside public spaces, or outside when in a crowded place. Masks can help individuals wearing them from catching COVID, but the protection is vastly improved when everyone is wearing one, especially inside.

Testing is useful for catching cases of COVID, but negative tests are not a guarantee. I myself caught covid last New Years Day from my brother-in-law who tested negative before visiting. If you’re visiting someone who is immunocompromised, you still need a mask and vaccine to really protect them, not just a negative test.

You can choose not to do these things; it is your right. However, if you want the pandemic to truly be over for everyone, then this is what it takes. Because it’s also your right to choose not to be a dick.

The Changes to the CDC’s Guide for Prescribing Opioids Changes Nothing for Pain Patients.

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I became a pain patient right around the time the CDC published its guidelines regarding opioids. I was initially given opioids for acute back pain and then suddenly no more. It was as if in the blink of an eye my doctors no longer cared that I was in pain. Many of the guidelines were codified into law by my state’s governor and no one wanted to help me anymore.

One practitioner told me to my face I just need to exercise more. Months of arguing with doctors until finally getting an MRI to diagnose my degenerative disc disease. Only then was I referred to a pain clinic and eventually I found someone who was willing to treat my pain. I was lucky. Many pain patients during these times were absolutely not.

Photo by James Yarema on Unsplash –
[ID: A pile of large white pills on a grey surface.]

Can you imagine being on a prescription that helps you for over a decade and having it forcibly tapered or cut off for no good reason? Now imagine it’s your pain medication, and that’s the difference between functioning as normally as possible and not at all. No changes to the current CDC Guidelines for Prescribing Opioids can ever bring back those who died of medical complications or suicide as a direct result of these draconian guidelines.

The Changes to the CDC Guidelines also cannot change the laws that states enacted to codify the recommendations into law. It does not change the DEA’s intentionally decreased opioid supply. It cannot reverse the opioidphobic attitudes many of the revised guidelines still uphold.

Yes, its true, they removed the limitation on prescriptions being higher than 90MME, but apparently “the devil is in the details“. The new wording may unintentionally lead to an interpretation that 50MME is now the preferred maximum dosage.

They also repeat the lie that there is no evidence for long term opioid use because of no long term clinical trials. While true, they omit that the reason is the ethical ramifications of giving someone in severe pain for a long period of time a placebo. Double blind trials are ideal but not the only possible way of obtaining medical data on the long term efficacy of opioids.

We cannot hang our hat on these revisions; the fight continues as ever. We need to come together to challenge opioidphobic laws and attitudes towards pain patients. Revisions will never be enough, and the CDC needs to do better.

(Please Note: This post was originally written in the spring but not published then due to medical reasons)

Spring Already?

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I’ve been too silent lately. A new blog like mine should be doing everything to get out there, especially writing blog posts. When I think of what stops me from becoming that prolific writer I’ve always wanted to be, it often comes back to the fact I can’t get myself to just start. I’m also often overwhelmed by where to start. ADHD at its finest.

I have high hopes for this blog but they can only go as high as I am able to lift. I have every intention of addressing the latest 2016 CDC Opioid Guidelines update that has claimed to loosen the restrictions on opioid limits. Of course there’s more too it and a lot to be said on it’s impact. I will have a post on that as soon as possible.

In a couple of weeks I will have surgery, hopefully my post will be ready by then. It’s foot surgery, so I’ll be having a lot of time to sit, and think, and write. Let us hope. I think I also may start looking for a co-author to help keep the content coming.

Another hope I have for this site is a potential email and phone campaign to change laws now in place in many states as a result of the original CDC Guidelines. I’ve also considered including the media in this campaign. That will take a lot more work, but it is something I really hope to accomplish. My biggest frustration is how ignored this plight is. If we can do something to bring awareness and potentially even change laws, we must try.

Undoubtedly, I have a vision I wash to pull off that is constantly pushed aside by my own illnesses. Sometimes I can pull through and get it done and sometimes I can’t. Please bear with me as I find this blog’s footing and help with the content.